My best friend Rose is only 37, but she has already been diagnosed with Head & Neck cancer 3 times in the last two and a half years. It seems that she "won" the cancer lottery, and managed to get one of the rarest types of cancer in existence. She was the 12th person in the world to be diagnosed with Undifferentiated Squamous Cell Carcinoma with SMARCB1 (INI-1) gene deficiency . The first time was 2.5 years ago, when a tumor the size of a golfball was cut out from her head. After 12 hours of surgery and 4 months of radiation and chemotherapy, she was hoping to stay cancer-free. She was out of work for 6 months, and we were grateful when she was able to go back to a semi-normal life. Almost 1 year later, it was back. This time, it was in her brain. Another 10 hours of surgery, and 4 months of experimental radiation therapy and chemo. Again she was out of work for almost 6 months, and her disability insurance rejected all her claims. Pre-existing condition, their claims adjusters said. The 3rd time 7 weeks ago, the cancer came back in her skull, and the oncologist was very hesitant to put her through a 3rd round of radiation and chemo therapies. Her body has been through so much already, she may not survive any more aggressive treatment. She lost almost 20 lbs and all of her beautiful, long hair during her last treatment. This time, her doctor enrolled her in a new, experimental study at Columbia University Hospital, for a medication that shows a lot of promise in completely destroying tumors. The problem is, she now lives in Florida and she will have to fly to NYC every 2-3 weeks for 6 months or more. The researchers have to monitor her progress and how the medication is working on destroying the tumor. Her and her husband have already burned through all their savings and already finished off all of their frequent flyer miles. While they are still hanging tough, the situation is turning dire very quickly. They have an 18 year-old in college, and a 7 year old in elementary school. They have never asked anyone for help and always managed to find a way out on thir own. Unfortunately, the situation is getting to the point where they can no longer manage by themselves and are asking friends for help. She is working on and off, because she needs to come to NY pretty often. So to say the least, it has been very tough. They need help with paying for medical bills and airfare to keep flying to New York.
Rose is an amazing, warm and loving friend. She is the one who will always go out of her way to help others. Even at the toughest points in her life, she is the one that I can always turn to. I still can’t understand why such a horrible thing happened to such an incredible person. The first time that Rose found out that she had cancer, she called me from the doctors office and we were both crying on the phone. She said, “ I just want to live, I have kids and I don’t want to die now”. To hear your friend say it, is just heartbreaking. I wasn’t ready for her to tell me that she had cancer. It was so unexpected, just out of nowhere. She just kept saying, please tell me that everything will be ok. I had no idea, but deep in my heart, I knew that it will be. I knew it, because she is such a strong person. And she definitely didn’t let me down. She pulled through the first surgery, then the second surgery and always stayed positive through the whole thing.
All the chemo, all the radiation, nothing put her down. Rose is one of those rare people, who always sees positive in everything and everyone. She is one of the most hardworking people that I have ever known. I just want her to finish her treatments and finally, god willing, be cancer free. I’m hoping that it will never come back again.
As some of you may know, it can become very tough to afford all the medical care that one might have.
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Thank you so much in advance to anyone who can help in any way.